I have had CFS since 2006. It has taken me awhile to find acceptance of this debilitating disease. I've finally come to realize that life with CFS means less doing and more becoming. I'm rebuilding who I am and what my dreams are. I am living the CFS life.

Saturday, January 31, 2009

First, my circling shark turned out to be more of a goldfish. With sharp teeth, I mean. It had a little bite, but it wasn't nearly as dangerous as I had feared. I took things easy, I was gentle with myself, and I bounced back surprisingly quickly. Yay!

Second, I actually hit a lot of my goals! I added a few good links and two actual pages to my website. I cleaned it up a bit and tweaked my key words. Plus, I have tons of good ideas to work with, and I'm feeling motivated to work on it. I checked my stats, and it looks like traffic is picking up! It's very exciting.

Third, I completed enough research to actually START MY NOVEL! Yes, I put pen to paper and actually began to write. I'm afraid I'm not going to be able to share it with anyone, though, not even my husband. I'm feeling a little protective of it, and I can't handle any criticism. I believe the fear would stifle my voice, and I wouldn't be able to write effectively. That's hard, though, because another part of me is yelling, "Look at me! Look what I've done! Validate me!" I think I'll let the fear win out this one time.

Fourth, I've added tons of good recipes to my recipe blog. I feel like I'm getting a good variety of meals that seem to be really easy to fix. I can't wait to try them all.

Fifth, I'm taking good care of myself right now! I'm pacing. I've skipped a lot of TV at night, so I'm getting to bed at a reasonable time. I've done three weeks of menus from my recipe blog, so we've had a lot less processed or fast food. I've kept up on yoga, and I've really enjoyed my belly dancing! I seriously haven't lost any weight, but I haven't gained any, either. And I feel good! That's the ultimate goal, anyway, right?

Ah, yes, challenges await, but for the moment, I'm basking in the warmth of good things!

Tuesday, January 27, 2009

I woke up with a sore throat this morning. I know what that means. I swear, I've been listening to my body tell me that I'm overdoing it again. I've slowed things down and taken it easy. It's just that as a mom and new business owner, there are things that HAVE to be done.

I worked all day Thursday, even though I had had two bad nights and woke up twitching (my "tell" that I'm maxed and need to recuperate). Rom had a delivery, so I ended up going in on Friday -- not much chance to catch up. Saturday, we went over my son's disappointing semester grades and sat down for a homework session. I taught my lesson in church on Sunday -- rewarding, but exhausting. Rom had a warehouse run and two deliveries yesterday, so I was back in the store. Before that, it was pulling teeth to get my son to sit down for another homework session. Plus, my daughter had to finish up a science fair project that was due ... earlier that day. Drip, drip, drip -- each one a little drop of blood in the water.

So, I'm not surprised the shark struck today. I'm getting sick. I can barely keep my eyes open, but I know I can't get back to sleep. I need to eat, but nothing sounds good. I think I'll spend the day relaxing with a good book. Maybe a peanut butter sandwich and some chocolate would help. Yes. Lots of chocolate.

Wednesday, January 21, 2009

A couple of weeks ago, as I contemplated the New Year, I was talking with my husband. I had finally gotten my head around the fact that CFS just might last for awhile -- and I told him, "I need to learn how to live with this." He answered, "No -- WE need to learn how to live with this." What a loving thing to say!

True to his word, we had a family council a short time later. We explained CFS to the kids more completely than before, and we let them ask questions. I told them what to expect and how to read the signs that I'm not doing well. We let them know that this is probably going to last a long time, and it was time to stop waiting for it to "just go away." We pointed out the way they have been taking advantage of my CFS symptoms -- like not finishing jobs because I'm too tired to hound them about it, or twisting my words because I can't remember anything. We let them know what kind of expectations we would have from here out.

Has it helped? Well, I'm not going to say everything got better over night!!! But, now my little boys aren't throwing fits to get my attention when I'm zoned out -- they are recognizing it as CFS, not indifference. The jobs have been getting done a little better. My oldest is offering to run a few more errands for me, willingly. There's a gentler attitude towards Mom these days.

The most amazing thing of all, I think, is a gift from my middle child. My two oldest have to get up very early -- 5:30 am. Waking them up every morning is torture for me, because it interrupts my precious sleep and I never know if I'll be able to get back to sleep after it. I definitely attribute it to exacerbating symptoms when I'm not doing well. Well, my 13 year old asked if it would help me if she set her alarm and started waking them for me. What an amazing offer from a teenager!!! I accepted, and that first week was heavenly! I figured she would try it for a week and then discover it was too hard and not worth it. So, when I approached her about it, she said, "No problem, Mom -- it's really easy for me to do. I don't mind it at all!" So, she's still doing it! Cheerfully! Amazing. Just amazing.

Maybe that's why this January has been so refreshing for me. I feel like a huge weight has been lifted off my shoulders, and it is because I am no longer carrying this burden alone. I feel like I can work on getting healthy without my family unwittingly sabotaging my efforts.

Wednesday, January 14, 2009

I almost titled this post Goal Setting for 2009, but I don't want to dictate my entire year right now -- just set some goals to get me started in the right directions.

I am off to a really, really good start! I discovered something important over the holidays -- I am a worrier! I never knew that, because I don't lie in bed at night thinking over all the things that could possibly go wrong with me and my family. No, this is new since I've had CFS. Whenever I have a big event coming up, I fret terribly about how much it is going to wipe me out. All that stress and anticipation on top of the actual event exhaust me way more than it really should. This is good information to have. It means that I need to be careful not to plan too many big events, and when I do, I should keep realistic expectations and not FREAK OUT!

So, back to my goals: I am using the tools on my website, Chronic Fatigue Community. I am eating healthy again. I'm using menus to plan healthy meals. I'm exercising better. I've increased my yoga a little, and I've started belly dancing! There's a great program on Fit TV that breaks it down into 10 minute segments. It has a nice, slow pace, but it picks up when they put all the steps together. It seems perfect for me to not overdo it.

As for my projects, I've decided I need to get focused. I will add one new healthy recipe to my recipe blog, The Flagging Chef, every day (averaged -- I can cheat and post several at once to meet my goal). Also, I will complete one new page for my website every week. I have so many great ideas, things that will help me by writing them down. I'm also hoping to share what I've learned with others in cyberspace who may be experiencing serious fatigue.

Finally, an announcement -- I am going to write a novel! While I was on my 3-day trip with my husband, an amazing idea came to my mind. I've always wanted to write a book, but I've always thought my life was too boring to write about. Now, I finally have a very interesting, workable idea. I have some resources for research, and I'm excited! I don't really know how to quantify it yet, so my goal will just be to work on my novel every week.

It is interesting how CFS seems to spark a level of creativity that hadn't been tapped into yet. I've seen this on other CFS blogs, too. I'm excited! Wish me luck, and keep me in your prayers.

Saturday, January 3, 2009

I have a confession. I am a certified, Mensa-qualified genius. Out of eight kids in my family, I was the smart one, the one who always did well in school. I tell you this not to brag, but as a point of reference.

This is something you do not hear about very much about CFS. We call it the weird brain thing, or just my crazies. The first thing I noticed was having a difficult time recalling names, even with people I've known and loved for years. Then, I started forgetting things on my short mental shopping list. It really freaked me out when I was driving to a friend's and I took a really weird, out of the way left turn. It took me a minute to figure out where I was going.

It's pretty commonplace now. I've left the shower with only one leg shaved. I've forgotten to shampoo before conditioning. I've wandered to the pantry only to stand there, wondering what I could have wanted so badly I'd leave my steaming hot chocolate on the table. Last night I forgot to put my pajama pants on -- walked to bed with just a short shirt. Thank goodness I've never left the house that way! My kids and I play a game called, "Guess what Mommy's really trying to say." Does "Put your clothes in the dishwasher" mean "Put your clothes in the laundry" or "Put your dishes in the dishwasher"? See, it's an adventure! You just don't know.

So, we laugh. I let my husband and kids tease me. It's probably good to be humbled about something you've always taken pride in, anyway. It makes my "lucid moments" all the more worth celebrating.

Thursday, January 1, 2009

Yes, I survived the holidays! We finished a most trying and difficult 2008 in the best way possible -- my husband took me to San Diego's Gaslamp District for a three day get away to celebrate our 20th wedding anniversary. For three glorious days, we enjoyed aimless wanderings and laziness and uninterrupted idleness. We did a little walking, a little shopping, a little sight seeing, and a little dining. We lounged in our room for hours, reading and watching football games and Project Runway marathons and past Dog Whisperer episodes (there were two TVs in the room!). I took steamy hot baths each night. We went to bed at a reasonable hour and woke up whenever we wanted. I was spoiled beyond reason and it was heavenly!

We came back to town just in time for a big New Year's party with friends and all their crazy little ones. We talked and ate and played Rockband and American Idol on the Wii. We set the clocks ahead two hours when the kids weren't looking and yelled "Happy New Year" at 10 pm with little ones none the wiser. The neighbors thought we were nuts! We got home, put kids to bed, got to bed at a normal hour, and snuggled in to bring in the New Year ourselves.

There is something so wonderful about a New Year! It is fresh and full of possibilities. You come into it with all the lessons of the last year in your back pocket. You forgive yourself and let go of past failings while resolving this year will be so much better!

This is the time for me to make changes. OK, I have CFS, now it's time to learn how to live with CFS. I think it's time to stop waiting for it to just go away. It's time to put into practice the things that will make me feel better, help me get more out of my life, and make me as healthy as possible.

Thank you to all of you who have listened and given me a boost when I've needed it! It feels so good to know you're not alone, that there are others out there going through wha you are. It is nice to not have to learn all the lessons yourself. I wish you all a fantastic 2009!

Hands Around the World

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About Me

I am a 44 year old stay at home mom. I have been married almost 20 years to the world's best husband. We have six wonderful children. My husband and I are starting our own small business together. I have had Chronic Fatigue Syndrome for two years now. It's such a strange disease (illness? condition? ailment?). I wanted to create a place where I could come and write about what it's like to deal with the challenges of living the CFS life. I honestly believe that sometime, somewhere, some doctor is going to magically tell me, "Oh, I know what this is!" and I will be cured. Until that time, I'm hoping to learn something about myself and maybe help others.